Please feel free to ask questions and/or comment on items that you are not sure about or would like to know more. While I make every attempt to be accurate and up-to-date, this blog is from a father's perspective and may contain errors. Please do not misinterpret this information as being how experiences with retinoblastoma will occur or should occur. This blog is simply about one beautiful little girl and her daily battles with a terrible disease.

Thursday, October 30, 2008

Well, since Gracie's blood counts were so low today she could not go for her dental appointment. She has a bunch of work that needs to be done on her teeth but the dental procedures pose a risk of infection for someone, like Gracie, who is immunocompromised. So we decided to make good use of our time and try to get a PhD! This is a picture of Gracie at the Blood and Tissue center in Austin Texas. I went there with her so that I could donate platelets. Gracie and others in her situation need platelets when their counts are low (Gracie has platelets infused last Friday). Platelets do not have a long shelf life and require more time for the donor, but less blood. So we thought that it would be good if we gave platelets when possible to help others like Gracie has been helped. We also would encourage you all to donate platelets (or blood for that matter) when you can.

Anyway, this is a picture of Gracie right outside the room where I donated. They are encouraging people to donate by giving PhDs to those that go so many times throughout the year. I was excited because I am in a PhD program right now and thought that maybe I could just change majors and be done right away! They fooled me though and I only found out after my donation that you needed to donate so many times in one calendar year, not just 365 days. Now the pressure is really on because you can only donate every 10 days up to 24 times a year and the calender year is soon ending. That leaves not too much time to get it done! I still think the poster is pretty funny.

Anyway, the point of this blog is to tell you all that I am wimpier than a 3 year old. Here is why.

We thought that Gracie might like to see that sometimes her dad needed needles (or "little pokes" as she calls them). So I called her over when they were going to do a finger prick. I really hate needles and pokes so I was really trying to be brave for her. The lab tech asked Gracie if she thought it would hurt and I immediately said, "Yep." She looked at me and told Gracie that it wouldn't hurt. Well, it did and I did not like it. Neither did Gracie, I think. She was interested in the whole affair but did not really want me to get pokes either. Though, she was excited to meet all of the techs and get new friends! She is such a little sweetheart.

Pretty soon they had me in a nice big chair and brought out the needle. I was ready to get up and leave but Gracie was right there watching me and so I stayed. I was probably a really annoying donor as I kept telling them that it was sore or the pressure was too great. I did not know how it was suppose to feel so I told them how it felt. One time the tech asked, "Does it feel like there is a needle sticking into your arm?" I agreed that it did. She glanced down at the needle sticking out of my arm and said, "That is pretty normal." I had to sit in the chair about 1 hour for the entire donation of one unit of platelets. My platelet count was already low so they could only take one unit even though they thought I would be able to give two units at the start of the visit. The process involves a machine drawing blood from you and separating the platelets out before returning the rest of the blood to you. So the machine constantly pulls blood then infuses blood from the same site on your arm. Returning the blood actually felt the most unpleasant as the blood was cooler and put pressure on your blood vessels. It was worth it though and, since the appointment, I have only felt uneasy when I think about them taking my blood. Overall the process was pretty painless except if you are a wimp like me and hates thinking of your blood cruising around in some machine outside of your body.

Gracie is even more my hero now as I have seen her give and receive blood and other fluids many, many, many times over the past two months and, while she dislikes it, she is ever so co-operative and always cheerful after its over. Speaking of Gracie she has been a bit tired today, but that is to be expected with low blood counts. She was quite the entertainer at the blood clinic. While there she would point to me and say, "That's my dad. He is MY James." Then she would proceed to say that her mom belonged to her sister but that I was hers. I am quite OK with that as she is my special little girl and I love her so much. To be entirely clear to all of you, I actually belong to Stephanie but Gracie can borrow me when she needs to.

Thank you all for your support and love. Gracie is doing marvelously. The swelling in her eye has been reduced each morning this past week and she is still full of energy and joy. She was excited last night to be interviewed by "Make-A-Wish Foundation." She told them that she wanted to go to Disney World. She is thrilled that she may get to go there soon and celebrate with her family. While at the interview, she received a doll and a magic wand, which she has played with every since!

Below is a picture of Gracie before her sisters left for church last Sunday. I thought it was cute so I added it in. Gracie misses going to church with them but loves to get in her dress and get ready to go each Sunday!

Wednesday, October 29, 2008

Platelets - 171 (Good thing given that she got whacked in the head yesterday and has a bruise!)

Hgb - 8.8

(Note that we got these results at about 1 pm. James finally found an ally in the lab so we can get things done! Good thing James makes friends where ever he goes. Gracie's smile is kind of helpful too.)

Sunday, October 26, 2008

So I'm not sure what Gracie's platelets are now that she's had her transfusion, but they must still be low as yesterday her eye hemorrhaged. Basically the sclera (white part of the eye) started filling with more blood. The bleeding has slowly continued throughout today. Maybe the bleeding hasn't continued, but the blood has spread further in the sclera. I called Dr. O. to ask if we should be concerned and she said if it's not affecting vision she wouldn't worry unless the eye actually started to bulge. What caused the hemorrhage? With as low as her platelets were it could have been spontaneous. Tonight I just compounded the issue when I was demonstrating my light sabre maneuvers to James and the girls. Our phone has a light sabre app complete with sound effects and music and I didn't know Gracie was standing right beside me while I was doing it (come on little boys aren't the only ones who played Star Wars growing up). Of course wouldn't you know I hit her right in her right eye. I didn't think I hit her that hard, but I guess her eye was more tender than she's been letting on. I felt absolutely horrible. Especially after all the jokes about if she's going to injure her eye make sure it's her bad eye she injures so we can preserve her good eye (there is actually an element of truth to that). But she seems to have recovered just fine and she doesn't even seem to be keeping her distance from me any more. When they enucleate an eye the child is always required to wear glasses after to protect the remaining eye. I need to look into getting her glasses to protect her left eye even if we don't enucleate the right eye as there will be some element of danger for a long time after chemo is over and I'd hate for anything to happen to the better of the two eyes. Childhood is filled with accidents.

We wish that the low blood counts would tire her out just a little bit so that she wasn't so extremely active still. It would be a lot easier to prevent injury that way. Today we had her out on a walk and she was jumping over and off of huge boulders. Lovely considering if she cut herself or had internal injuries she'd just keep bleeding. Oh well, what's one to do. We're certainly glad that she's taking everything in stride (or leaps and jumps). We are so very blessed.

Saturday, October 25, 2008

Apparently the pictures upload in reverse order but you get the idea. Gracie had such low blood counts that she needed a transfusion (which came after all of these pictures). One would think that she would be tired and just want to watch a movie or something but I cannot get myself to say no when a sweet little Gracie says, "You want to play catch with me?"

Gracie pushing the lawnmower all over the center. It did not make enough noise on its own so she would supplement with squeels and lifting the front end of the mower and then dropping it!Gracie finds the toys in the big common area of the cancer clinic!This is Gracie and her Sammie doll. Sammie is the doll that has a port-a-cath. Gracie gets to clean and access the port and then give drugs to Sammie. It helps her to understand what is being done with her. She loves the doll and asks for him as soon as she walks into the clinic.This is Gracie taking her shoes off at the clinic in order to get weighed. She has the routine down at this point and is very clear that her socks do not need to come off, the blood pressure cuff should go on the left arm (not the right and certainly not her leg) and the thermometer never need go in her mouth as an armpit reading will do- in case you all wanted to know.

OK, I know that I have not really posted for a week. Stephanie did an excellent job of bringing you all up to speed on the latest events of this experience on the last three posts. It has been kind of crazy for us over the last little bit so I just have not taken time to post what some would call the "routine" things that Gracie gets to do now.I have found it ironic to think of how the word, routine, gets used sometimes. For example getting an infusion of platelets and getting blood work every week are apparently routine. I know that means that those things are done frequently and much is known about how to do them, etc, etc, but they have never been part of my routine! I never really thought much about what cancer treatment really entailed before August of this year and then even after we knew that Gracie would receive treatments I thought that we would have a few days of chemotherapy infusions, then wait around with a sick little girl until the next infusions. Well I have found that it entails much more than that. For example, since the last trip to Houston for chemotherapy (we came home 2 weeks ago today), Gracie has received a shot on Sunday; medication twice a day on Mondays, Tuesdays and Wednesdays; eye drops 4 times a day for one week and twice a day for the second week; a follow-up doctor's visit on the first Wednesday; CBC (complete blood count) taken on Thursdays which can take anywhere from 15 minutes to an hour waiting your turn; the first Friday was a nerve racking day as Gracie's eye started to swell again; each day after the swelling seemed to be getting worse in the morning and then return to normal throughout the day; since Gracie's immune system is compromised we have to be careful who she comes in contact with and where she goes; Thursday (2 days ago) the swelling is so bad in the morning that she cannot open her eye so we talk to the doctors again; Thursday afternoon we find out that Gracie's blood counts are very low and a blood transfusion is required; Friday the swelling is even worse than Thursday and we spend all day in a cancer clinic doing tests and getting a platelet transfusion.I am sure I missed something in the list. I should point out that Gracie has been wonderful throughout all of this and I am happy with how things are progressing and the care she is getting. It is just amazes me that there are so many little things that crop up almost daily that need to be done because of the cancer Gracie has. Much of what needs to be done are not even that time-consuming but they take one away from other responsibilities and activities. Then even, when nothing "extra" needs to be done the cancer or Gracie's care is on my mind. Sometimes I still worry about how the treatments are affecting her and how effective they are being. I continually wonder what we should do that would be best for her and if there is something we are not doing. So sometimes when I look back over a week and think of all of the work that I wanted to get accomplished, I see how little I actually got achieved and wonder where I wasted all my time only to realize that all of those little extra things add up to more than I had anticipated. I am not trying to blame anything on Gracie or even my lack of accomplishments on her cancer but rather trying to point out how different living with cancer is than what I thought it would be like.Suffice it to say that the last week was really quite busy, especially for an off-chemotherapy week! Most of the events were small stuff that needed to get done. Perhaps stuff that is not so worrisome for Gracie's medical team but stuff that we just need to keep doing to keep fighting off her cancer. Which fight I am confident that Gracie will win. I am so pleased with how things are going and the care we have been getting. I wake up in the morning and get ready. Not long before I leave I can guarantee that Gracie will wake up and come find me. While it is sad to see her right eye swollen so big, I am almost excited to think of those drugs killing the cancer in her eye. I do not even know if the drugs are still really in her eye or if the swelling has anything to do with battling cancer, but the swelling reminds me that we are doing everything we can to save her eye and how thankful I am that the cancer has been found.On that note, I thought I would just mention how excited we all are for another Gracie (a little girl about 5 or 6 years old). A friend of ours has a niece named Gracie that was undergoing chemotherapy for the past few months. Her story is not really mine to tell but when the cancer was found they told her and her family that they would do 5 rounds of chemotherapy and then need to assess how advanced the cancer was before proceeding onto the next phase. Gracie recently completed her 5 rounds and the doctors did their tests. They told her that they had never seen that type of cancer respond so quickly and there would be no need for additional treatments! We met Gracie for the first time last night at a Halloween party. She was a cute little tinkerbell and came over to tell us the good news! She told our Gracie to keep fighting and "Beat that cancer." We are so happy for her and her family. We are happy to be reminded again about the resilance of little children and that miracles do happen!As always, Grace and our family appreciate your love and support. I know that many of you have been checking the blog and apologize for the lack of posting over the past week (everything has just been routine :)). Gracie is a real trooper and a joy. Watching her in the cancer clinic as she ran aroung throwing balls and trying to bounce like a ball was so fun! She was suppose to be so tired and weak but she just had to be herself. That is just how we like her!

Friday, October 24, 2008

These aren't the greatest pictures (her leg bruises are much darker than they appear) but they kind of give you an idea of the bruising she experiences when she's thromocytopenic (has low platelets).

After spending Thursday afternoon at a friends house jumping on a trampoline, and playing on a big old play ground we went shopping for an hour or so. When we got home there was a message on our voicemail telling us Gracie's platelets were 14 and she needed a transfusion. The cancer clinics were both closed as it was about 5:30 pm so we called the oncologist on call. The Houston oncologist told us to get in touch with the oncologists here. So when I called the oncologist here he said we could do a transfusion at the hospital or wait until the next day and do it in the clinic. Originally I said we'd do it in the hospital but then when I did a price comparison and considered how late we'd be up as it can take several hours to finally get the platelets from the blood bank I called the doctor back and said we'd go to the clinic Friday morning. When I asked if it was putting her at risk to wait until the morning he said she should be okay but to be very diligent in making sure that she didn't hit her head or fall or do anything like that as her clotting ability was severely limited. The funny thing was that as I was dressing her earlier in the day I noticed she had lots of bruises on her legs and even wondered what her platelets were, but I didn't think they would be as low as they were. In hind sight I guess she shouldn't have been jumping around on the tramp, but really she's 3 and we still need to let her act like it.

Friday morning she had petechia all over her back and on her eye lids. When we took her bandage off from her blood draw it was apparent that it wasn't healing properly. We gave her a bath and dropped our kids off with a friend and then took Grace to the cancer clinic for an infusion. On exam they saw lots of petechia in her mouth as well. They accessed her port and did a CBC. Her platelets were down to 3. Her ANC is 560 so her immune system is quite compromised right now too. Strangely enough she still has good hemoglobin though. We waited 3 hours before the platelets finally arrived. The infusion only took 30-40 minutes. All total we were at the clinic for about 5 hours. It makes for a long day. Gracie was just wild too. She played ball with everyone she could and continued to laugh and run and jump every where she went. It was obvious to everyone that her low blood counts were really holding her up. She got to meet some members of the women's basketball team and she absolutely loved that. I think I've decided that for every time Grace gets blood products I'll donate blood. I just need to figure out where to do that. Actually I'd like to figure out how to become a direct donor so that if she needs blood it's mine she's getting, given that we're the same blood type. And I'm pretty sure my blood is clean. I haven't exactly lived a high risk lifestyle, although I was a health care worker so perhaps that's exposed me to more nasty things than I'd like. None the less, I'm a pretty safe bet.

Tonight as we were getting Grace dressed in her jammies we noticed that she has a large black bruise on her belly. It wasn't there this morning. They said it would take a couple of hours for her platelets to go up. I hope she's had all that she needs. We'll just watch her really closely and hope she starts to heal up. The miracle of this all is that the labs FINALLY got the CBC results in to Houston on the same day that they were drawn. That's only the 2nd time that they've done that since she started treatments. I think they were put on the earth to be a scourge and pestilence to cancer families. As if cancer isn't enough.

Ever since last Friday when Gracie woke up with more inflammation it has been getting increasingly worse every morning. Then the swelling goes down throughout the day, so by the evening it's almost normal. Then she wakes up again with swelling even worse than the previous morning. Dr. O. doesn't seem overly concerned as there aren't any signs of infection. But she's assured us we can call her any time if we become worried. Here is a picture of the inflammation Thursday morning, it's not the most flattering picture but you can see the swelling clearly.

Friday, October 17, 2008

So this morning, Gracie woke up and her eye had swollen again! (I know her hair is crazy in the picture but it was first thing in the morning.) It was not really bad but more swollen then yesterday. We were very concerned and wondered if she should go back to Dr. O. Yesterday at about noon we had given her the final dose of eye drops, which had some anti-inflammatory agents in it. We had given them over the last seven days. We thought maybe this attributed to the swelling (being off the drops) but were unsure.

Stephanie phoned the oncology team in Houston to find out her blood counts. That is when we found that the lab had not yet sent the results! How frustrating! So we did not know how concerned to get over the inflammation. Shortly after Stephanie's phone call the lab results came in. Then we spoke with Dr. O on the phone. She was concerned but thought that we should restart the eye drops and wait a few hours to see if the swelling went down during the day. Gracie was not in any pain and seemed pretty happy all morning. She did point out to us that her eye was getting big but more as a matter of fact then that it was causing discomfort or inhibiting her.

So we put more drops in the eye and went about our daily activities. The swelling did go down and Gracie seemed to enjoy her day. I got home from work today and was greeted by a cheerful and loving Gracie yelling, "Daddy, you're back! You're back!" She makes us all feel so loved and appreciated. We are glad she is in our home and love her so much!

All of them are surprisingly high for this point in the chemo cycle. The lab still did not deliver the orders STAT as they are suppose to. We went for blood work at 8AM on Thursday and they told me to expect the results within a couple hours. Stephanie finally called the next morning and they were only sent this morning just before 8AM.

Wednesday, October 15, 2008

This morning Gracie went to see Dr. O (our pediatric ophthalmologist near our home). She had an 8AM appointment. Gracie was a real delight and cheerful for most of the visit. She was mad that I did not let her stay in the waiting room to finish her TV show but otherwise cheerful. Around her eye is still slightly swollen and the white in her eye is a bit red in color, almost like a bruise.

Dr. O was pleased with how Gracie looked. Her acuity is still fine and Dr. O even mentioned that the vitriol seeds appear smaller then they have in the past! That is great news. Dr. O helped me understand a bit more about how the carboplatin injections worked. I explained before that the injections went just under the outside layer of the eye so that the drug was actually in the eye. However the conjunctiva is a layer that actually goes over the front of the eye but does not go all the way around the eye. So there was an incision in the conjunctiva and then a blunt needle was used to inject the carboplatin directly behind the eye (in the back of the eye socket if you will). There is a space for about 3mL of fluid back there and they injected 2mL of carboplatin. So the bulging eye was not really the eye itself swelling up but rather the conjunctiva being pushed out from its normal position and looking somewhat inflated. The eye still looked terrible and there was lots of pain from everything being pushed out but it was not exactly the eye that was swollen.

Maybe everyone did not want to know all that but that is what I found out today!

Gracie was quite tired today. Her blood counts are likely quite low. Hopefully she will not get sick as she did after the first round of chemo. So far she has been happy and healthy. For that we are truly grateful.

This is not the most flattering of pictures but she was awfully tired Monday afternoon (prior to our trip to the park). You can see how the swelling is decreasing. Incidentally, you can also see the white mass in her eye. That is one of the tumors (or a group of them) floating in her eye.This is Tuesday morning at breakfast. She is happy and the swelling has diminished!

Today was great for Gracie. She needed to get drops in her eyes four times (as is the daily routine since the procedure last Thursday). She seemed to feel fine today except she got tired much earlier than usual. By the time 7PM rolled around it was all she could do to get into bed before falling asleep. I am taking that as a sign that the drugs are doing their job and battling the cancer! Yeah for chemo!

Monday, October 13, 2008

This is Gracie having fun at the park on Monday night! It is nice to see her smile but it kind of hides how well her eye looks.She is not really her smiley-self here but you can kind of see the right eye here. It is still a little swollen but mostly just looks like a black eye.

OK. I did not get a holiday today but it is nice to celebrate two thanksgivings every year!

Gracie continues to show tremendous improvement. She looks like she has been in a fist fight and was a bit tired today, however, the swelling is nearly down to nothing. Gracie's eyeball is red. They told us that it might look bruised for a while. Gracie does not seem to have any significant pain from the eye. It still must bother her a bit because sometimes she just touches it to see what the eye is like. Once today she still called it her "big eye" when she was talking to me. She still does not like the drops but knows that we are going to give them to her so does not fight. I do not even think they bother her too much anymore, she is just like anyone and flinches when one drops liquid right onto the eye.

We continue to hope and pray for her health, especially over the next week or so while her immune system is compromised.

Some other good news that I have forgotten to mention is that she only needs to have blood work done once a week (instead of twice a week like last time). Before we wanted to know as soon as the blood counts were recovering so that we could stop the shots. Given that there is only one shot we have already stopped and so the exact days are no longer a big concern. Hooray!! We are so grateful for even the smallest victories in this experience and count our blessings when we can limit the procedures or tests that Gracie needs to go through!

Sunday was a wonderful day. The swelling in Gracie's eye seemed to reduce by the minute! She was nauseated in the morning. We gave her some of the Zophran and within an hour she was back to her regular self. She enjoyed spending time with family and had no need for pain medication. We did have to administer eye drops for Gracie as well as one shot. However even this was exciting because this was the only shot required at home. The previous round we had given her a shot every day however this time only one shot is required. The shots help her low blood counts recover more quickly and the hospital generally gives just the one shot for patients. The type of shots that require one shot every day is part of the clinical study protocol that Gracie was going to be part of. However, paper work was not filed on time, so we are not bound by the precise protocol and so opted to move to only giving one shot. Gracie hated the shot but at least we do not have to torture her with them everyday.

Gracie hated the drops while in the hospital. I think it is mostly because we had to force her swollen eye open to give them. Now she still says that she does not want them but tolerates them much easier.

We are excited to see Gracie back to her normal self and playing so happily with her sisters! We feel that the Lord has blessed her and us so much! We are grateful for your prayers and love. We continue to pray for Gracie to keep her right eye and for the medication to work quickly and effectively.

Today I've been reflecting a lot on our experiences of the last few days. There is definitely something to be learned from all of our experiences in life, even the really horrible ones. Today at church people asked me how things went in Houston, and that was the word that I could best use to describe it - horrible. The staff we worked with were wonderful and I'm glad that we've taken one step further in destroying the cancer in Grace's eyes, but to see your child in so much pain is not something any parent would like to see. Any one who has dealt with pain management knows that it is far easier to keep it under control than it is to chase it and bring it back into check. It took 8 hours of getting 2mg of morphine every two hours to bring it back under control and even then she didn't go longer than 3 hours before she needed another dose of morphine over the next 24 hours. Then we were finally able to wean her onto tylenol with codeine syrup.

So why have I been reflecting on this today? During the sacrament at church I thought of how much pain Jesus suffered on our behalf. Far more than Gracie did. And His father had to just watch him go through that, he wasn't able to pick him up and hold him as I did with my little girl. He had to do it on his own. This week's experience has helped me to internalize how difficult this must have been as now I too have watched my child suffer and felt how hard it is. At least I was able to hold my little girl. Today is my oldest child's 7th birthday. I've been a mom for 7 short years. In that time I've had my son go for surgery. I've seen my kids be sick and have minor injuries. But this past week is the first time I've seen one of my kids really suffer in pain. The love which our Father in Heaven has for us must be so strong. He knowingly sent his Son to this earth with the intent of suffering for all the sins of the world. And Jesus Christ, Our Saviour willingly did so. What comfort this has given me to know that He knows EXACTLY what it feels like to suffer this much pain, and to watch one's own child have to go through this. I hope this experience never repeats itself, that Gracie's next injections are not as painful as this one was. I wish she didn't have to hurt as badly as she did on Thursday and Friday. I've always thought people were foolish when they declare their gratitude for their trials in life. I am not grateful for this trial, nor will I ever be. I am however grateful for the lessons I've learned through this experience. I'm so grateful for the renewed appreciation that I've received for the atonement of my Saviour Jesus Christ and His love for me and my family. And I'm grateful that He is always with us and does not leave us comfortless.

"Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

I will not leave you comfortless: I will come to you." John 14 : 27 & 18

Sunday, October 12, 2008

As Stephanie mentioned previously, a group of seminary students (youth attending daily morning religious classes), decorated our lawn on Friday morning for Gracie. Gracie was in Houston for treatments but Stephanie's mom, who was staying with our other children, snapped a few shots that morning. I thought the picture above was especially appropriate for this blog.Here is a shot of most of the decorations. There are messages on some of the hearts and Gracie especially liked all the golden suns!Here is another example of the cute decorations and hats the students had made for Gracie.Here is Gracie on Saturday afternoon. She had just returned from Houston and loved checking out the lawn. She was so excited to look at all of the items and talk about them. She gave me a heart as a present and said, "This is a heart for you daddy. I love you!" She just keeps spreading all the love.

As you are probably tired of hearing me say, we are so grateful for the love and support that we have been given. It is amazing to see how many people care and I cannot begin to list all that people have done. We are truly thankful for you all. Gracie and our family have been so very blessed!

Saturday, October 11, 2008

Gracie did extremely well today. In the morning the swelling in her eye looked the same as last night. Gracie rested much of the morning. Then several volunteers showed up on the unit to do crafts with all of the kids. We told them that Gracie probably did not want to go but would ask her. As soon as Gracie heard that they were doing crafts she said, "Sure" and starting climbing out of bed. She went into the playroom and did not do any crafts but enjoyed her time with her mom. I stayed in the room because a doctor was suppose to come and tell us we could go. Right at 11AM Stephanie and Gracie came back but the doctor had not come. Stephanie went to heat up our lunch and while she was gone a doctor came in and talked to me, looked at Gracie and said he had no problem with us leaving. He just had to confirm with someone else and then we could go. So I packed everything up, we had lunch. Gracie started being quite perky and wanted to eat her breakfast and lunch. She was really talkative and pleasant as long as you did not touch her port. So then we waited and waited. They kept telling us they were waiting on a signature. So just after 3PM we finally left. The trip home was fairly uneventful except that Gracie's eye was getting noticeably less swollen! She was pain free and she could see from her right eye more and more. By the time she got home she was so excited to see her sisters and run around. It was great to see our little Gracie back to normal. Her eye is still very swollen and even more red, but looks much better than this morning.She seems happy to be back in her home and in her bed. We are so thankful for her health and her resilience. We are especially grateful to see her without pain and back to her cheerful self!

Gracie's pain seems to be subsiding somewhat. She is still not herself and needs pain medication fairly regularly. Her right eye bothers her and she has a hard time opening it (but can open it if she works at it). She has learned to hate her eye drops as we need to pin her down and force her eyes open to give them. I know they are helping so we keep at it but it is not fun to see her hurt. It is always nice to see her being so pleasant with the nurses and doctors though. She explains to them how her eye hurts and also lets them know how to check her blood pressure and temperature.Chemotherapy was started at about 9PM last night. Gracie slept through much of it. At 11PM she was disturbed and became quite perky. She wanted to watch movies and talk to everyone in sight. By midnight she was asleep again and slept quite well the rest of the night. They had finished the infusions prior to midnight and were just giving fluids. She had 1 hour of carboplatin and 1 hour of etoposide last night. After the etoposide they require 2 hours of fluid infusions. She remains attached to the infusion pump for the entire time she is admitted and so has a little bit of fluid being infused when not being given any drugs.One of Dr. P's residents came and spoke with us yesterday. She confirmed that while Gracie's eye has swollen more than usually they are not terribly concerned about it as the swelling will subside and her eye will be fine. She also said that she thought the pain was largely due to the stitch on Gracie's eye. Apparently one stitch on the eye ball can be quite painful. The resident also mentioned that the swelling may get worse for a couple of days and may last for a week or so. We hope that the pain goes away much sooner than that.All of Gracie's doctors and nurses have been excellent. We have truly been blessed. We continue to pray for Gracie's health and speedy recovery. We are grateful that the chemotherapy has been effective on reducing the tumors in Gracie's left eye and continue to pray that the drugs will effectively treat all of her cancer so that she can keep her right eye.Thank you all for your concern and love. You continue to give us strength and hope.

Friday, October 10, 2008

Yesterday as I was waiting for Gracie during her EUA I was watching several different sets of parents who were also waiting for their children. Many of them had grandparents and other support people there. They were obviously very concerned and worried for their children. As time passed we watched their doctor come and update them all on how the procedure went. They all actually had the same doctor. Apparently their children were all getting tubes put in their ears. It's obviously a very short process because we saw at least 5 families come and go. It made me think about our nature as humans, about how our troubles seem so huge until something else comes along and makes you realize how very fortunate you are. If one of my children were to go under anesthesia and get tubes in their ears six months ago I would have stressed about my poor child. And now here I was, waiting to see how my daughter's cancer was responding to chemotherapy. Gracie's problems are so severe compared to getting tubes in ears, but looking at the contrast in severity between these families and my own I couldn't help but think how blessed we are as Gracie's condition could be so much worse. There are so many other conditions so much worse than retinoblastoma.

This thought was reinforced last night. I was in the hallway talking to our RN when another mom walked by. Our nurse (Vida) asked how her daughter was doing, and that mother hesitated before she answered. Vida clarified and asked if her daughter was comfortable. To that the mother answered yes. I walked away at this point but as I did I could hear the rest of their conversation. This mother was telling Vida that her daughter was a fighter. She was told two nights ago that her daugher wouldn't make it through the night and here she was still. As I walked into my room I felt so much sorrow for this other family and so grateful for all the blessings that we have. Our room is right across from the elevators and late last night our door was open and I saw this mother and her husband waiting for the elevator. Their arms were full of all of their daughters belongings. My heart broke and I wished I could do or say something to help this family. I just prayed for them. We are so truly blessed. I'm so grateful that Gracie is doing as well as she is and that it's only retinoblastoma that we're dealing with.

Thank you for being so supportive of us all. Not only our friends and family but also those who know our family. The hospitals where my mother works have been doing so much for her to enable her to spend so much time with us and that has been invaluable for us. We've been able to spend our time taking care of Grace and not worry about who was taking care of our other three children. We've known they were in good hands as they LOVE spending time with grandma. So thank you for the support you've given us, our parents, our siblings, and our children. My parents awoke this morning to a lawn full of get well signs and things for Gracie from a seminary class from church. That was so fun for all of our kids who've seen it so far and we look forward to showing it to Gracie. She's loved all the cards and gifts that she's been getting in the mail also. We appreciate all the moral support you all give us. It helps more than you could know.

This picture is of Gracie in the recovery room after her EUA and subtenon carboplatin injections. Her eye is red and swollen, but we were expecting this. Little did we know how bad it would get, we weren't expecting that.

This picture was taken in the cancer clinic immediately prior to being transfered to the cancer inpatient unit. Her eyelids are obviously swollen, but not badly enough that it is right shut yet. It allows you to see that her eyeball itself is swollen. It kind of looks like a plastic bag bulging with fluid between her two swollen eyelids.

This picture is more of a closeup to show the fluid filled sclera (white part of the eye). It's bulging with fluid and is causing Gracie significant pain. She requires IV morphine every 2 hours to remain comfortable. I'm not sure she's ever fully comfortable but at least with the morphine she's not screaming in pain.

Gracie, Stephanie and I left home Wednesday night to come to Houston. Gracie needed to be at the hospital at 6AM Thursday for her scheduled EUA and carboplatin injections. The procedure took much longer than it should have. Dr. P came and spoke with us about 2 hours after the procedure was suppose to start. She explained that they had not received sufficient carboplatin. Gracie required subtenon injections of 2ml of carboplatin. We were surprised to learn that there would be an incision on the outside of the eye (through the conjunctiva). Apparently this is what subtenon injections mean. The drug is then injected under the outside layer of the eye. So basically the carboplatin is contained within the eye but not directly into the interior of the eye. We knew that it is never good to stick anything into the eye's interior for fear of the cancer spreading. Anyway, Gracie needed one stitch in her eye and Dr. P explained there may be a little bit of pain and some swelling and redness in the eye. She also gave us great news that the two tumors in Gracie's left eye had noticeable shrinkage from one month ago. Dr. P had used laser treatment on those tumors and was pleased with the progress being made there. Dr. P told us that there seemed to be few changes to the right eye (the bad eye) except that the vitrial seeds (the tumors floating in the eye) had been positioned differently during this exam and allowed her to get a better look at all of the tumors. She was pleased to report that some of the tumors were not as big on that eye as she had originally thought. Usually with the amount of vitrial seeding seen in Gracie there is at least one very large tumor on the eye. Gracie's tumors were not as big as expected however there were even more vitrial seeds then had originally been thought. So I guess that is good news (smaller tumors) and bad news (more vitrial seeds, which are hard to kill but less likely to spread). Dr. P told us that she still felt like Gracie has a 50% chance of saving her right eye.

So, after Gracie woke up, we could tell she was in a lot of pain. She had no desire to be there and just wanted to go home. They gave her some morphine in the recovery room and that helped with the pain. Eventually we left and Gracie was quite perky for lunch (which she insisted needed to be a sandwich and NOT a McDonald's hamburger). She even enjoyed drawing lions and suns in the waiting room of the cancer clinic for a time. Then she started getting fussy again and complained about her eye hurting. There were no available beds in the cancer unit but they found us a treatment room where we tried to pass time using the computer and caring for Gracie. She was in a lot of pain in her eye and there was a lot of swelling in the eye. Morphine seemed to be the biggest help in getting Gracie to calm down and rest.Finally there was an opening on the cancer unit at 5 or 6PM. So we moved into a room with a real bed and TV. We found that the IV cancer treatments could be started at any time after the EUA, so they prepared Gracie for her treatments. This included lots of fluids and anti-nausea drugs (in addition to pain medication). As the night progressed her right eye continued to swell. We became more and more concerned with it. None of the nurses or residents that stopped by seemed to know anything about what to do or why it would do that. Several calls to Dr. P and others indicated that this was not an unheard of occurrence. Eventually though Gracie could hardly close her eye. The eye was bulging so much that it was coming out from under her eyelid even though her eye was closed. The on-call ophthalmologist was called in and explained that the swelling was not due to infection and just a reaction. It would likely go down over the next few days. We were to watch for swelling such that the eye could not be forced open or was hard to the touch. I tried to take some pictures of the eye but I am not sure that they do justice to what it looks like. This was pretty scary for Stephanie and I. It was also very painful for Gracie. We are happy to hear that it is not a serious problem but it is still hard to see her in such pain. The thing that I keep hoping is that this is an indication that the drugs is working and killing those visceral seeds. Since her eye does not seem to like the drugs, I hope that the cancer likes them even less.

Finally around 11:30PM, everything was ready for the chemotherapy. She received a carboplatin infusion for 1 hour, then a vincristine push (only took 3 or 4 minutes), then etoposide for another hour before 2 hours of additional fluids. I tried to stay up with her and monitor any changes to her condition. I kept dosing off but Gracie did really well. Everything went fine. She needed to use the bathroom quite often because of all the fluids that were going into her. It is always clear when she needs more morphine because she will point to her eye and tell you, "I don't like this" or "I want this better." One time she was crying and said, "I just want to get outta here."

I agreed with her but know that all of this will eventually help her. It is hard to see her in pain but I take comfort in knowing that she will soon be better. The cancer will soon be gone!Thank you all for your prayers and love. We continue to be overwhelmed by the support we receive from family and friends.

Thursday, October 2, 2008

Gracie is doing wonderfully and now when her sisters tell her they get to go to school she enthusiastically tells them, "I get to go to the doctors!" We are looking forward to round two starting a week from today.Our new friend Noah is going to start his chemotherapy treatments tomorrow. While we have never met Noah and his family we are excited for them to begin their treatments. It is good to be started on the path to being cancer-free. We admire their family's faith and courage throughout the past week.

Now for the original purpose of this post. Some have asked us why retinoblastoma is a childhood cancer and why it does not affect adults. I often wondered this myself and came across the answer in a book called "Childhood Cancer: A Parent's Guide to Solid Tumor Cancers" by Honna Janes Hodder & Nancy Keene. The Candlelighters (A childhood cancer foundation) sent it to us a week ago. It talks about how immature retinal cells are called retinoblasts. These cells grow in the fetus and early years of a child's life into the rods and cones found on the retina (rods and cones detect light and send signals to brain so that we can all see). Once the retinoblasts have formed mature rods and cones they lose the ability to multiply. It was in the division and multiplication that the mutations had occurred to start the tumors, so without this function there is little risk of a tumor growing.I found a good explanation on the website for the Children's Hospital of Philadelphia (http://www.chop.edu/consumer/jsp/division/generic.jsp?id=78814). I will paste it below.

What is retinoblastoma?Retinoblastoma is a rare cancer originating in the part of the eye called the retina. The retina is a thin layer of nerve tissue that coats the back of the eye and enables the eye to see. Most cases involve only one eye (unilateral), but both eyes may be involved (bilateral). If retinoblastoma spreads, it can spread to the lymph nodes, bones or the bone marrow. Rarely, it can involve the central nervous system (CNS).

Retinoblastoma is a malignant tumor composed of retinoblasts (immature baby cells) in the retina. These cells form the nerve tissues (rods and cones) at the back of the eye. Their job is to form images. The images are then transmitted by the optic nerve to the area of the brain responsible for sight.

Retinoblasts develop from a single cell during the early development of an infant in the womb. During gestation and early life, these cells are able to divide and multiply. This is the process that helps make enough cells to populate the retina. As children age, their cells undergo a process called differentiation and become mature rods and cones. The cells are no longer able to divide and multiply, which is why retinoblastoma occurs very rarely after the age of 5 years. Children may be born with retinoblastoma, but the disease is rarely diagnosed at birth.

We do not know what causes retinoblasts to turn into cancer cells but we do know that it in order for retinoblastoma to develop there must be a change or mutation in both copies (one from each parent) of a gene called RB1. What precisely triggers this change or mutation is not known.

Most children who begin treatment before the retinoblastoma has spread beyond the eye are cured. A major goal of treatment in children with retinoblastoma is preserving vision.

Great strides have been made in treating retinoblastoma in recent years; many children retain their vision and more than 95 percent of children with retinoblastoma can be cured.